Memorial Day

The night was slightly tough as we were both really worried about Jake's allergic reaction and spent most of the night checking on Jake's breathing to ensure the allergic reaction wasn't taking a more serious turn.   He slept fine and it appeared the medication was in control again as the hives dissipated.  The rest of the day followed normal form with the kids, a play date with friends and then returning back to the house.  Jake hasn't really shown major signs of his hand or hip limiting his big smile and joyful spirit.   Our concerns remain the cause of these allergic reactions and wondering are they all connected in some way, are they different reactions to different things.   We will take Jake to an allergist to at least get checked out even though they can't run more specific tests till he puts these allergy medicines behind him.  Jake will return to school today and should garner some attention to his cast with his classmates.  We hope there won't be any additional allergy complications and we can set our sights forward to his pre-school graduation and eventually cast removal in a couple weeks.

Jake's 5th Birthday

Well, there were many reasons to celebrate, being home, Jake feeling better and of course the boys birthdays.  Today was a happy day as the boys were excited to be able to finally say they are now 5 years old.  We hung out and played most of the morning and headed out for a late brunch with the family.  Both boys put on one of their gifts, superman and batman shirts complete with velcro capes.  Jake didn't really eat but was feeling okay.  We returned home to prep for an informal get together with the family to celebrate the bday and have some pizza and cake.  Everyone was having fun until we noticed Jake's left hand blow up around the knuckle area.  Our heats sank as we worried about a return of another allergic reaction.  We called the Dr. and gave him some benadryl but before long more and more hives appeared on his body.  We just gave him the steroid and he is sleeping in our bed so we can keep our eyes on him.  We will keep the epi-pen close and be on alert tonight to make sure it doesn't get more serious.  We are starting to really wonder the source of these allergic reactions.  A few weeks before the surgery Jake had a slight reaction after his vaccinations and his upper lip blew up but then went away pretty quickly.  With the confusing developments in the operating room and now this will keep us on guard to figure out if they are isolated incidents or all connected.  Unfortunately, we have to wait a number of weeks to be off the medicines before we can see an allergist.  Here's hoping the allergic reaction is controlled from the medicine.

Home Sweet Home

Well after sleeping well, Jake gave us what we always hope for a big smile!  It was nice after a tough day and night to see our Jake exhibit his normal self.  He launched back into his normal play routines around the house and was happy and content for the day.  More surprising was that Jake walked on his own around the house, up the stairs and even danced a bit.  A welcome sign considering that his hip being the donor site for the bone graft in his thumb is supposed to be quite sore.  Jake welcomed a few of his close friends and was content to blend back into his normal routine.  No emergence of "Angry Jake" today a real positive for all of us.  He took his medicines without a fight and went to bed immediately.  We root for a restful night for all as tomorrow brings Jake and Luke's 5th Bday!

Discharge Day

Jake finally succumbed and slept most of the night and in fact slept through several rounds of Dr.'s and didn't wake up till 10am.  He hadn't slept much previously so it was much needed.  The consensus was clear Jake was going to be able to go home as expected especially now that the allergic reaction had come and gone without any signs of reemergence.  The rest became standard procedure, reviewing all of the paperwork, signing the discharge forms, and filling the many prescriptions to take home.  It was check-out time at the hotel and we walked around some of the streets around the hospital.  Jake found a construction site with huge machines and cranes and the orders were clear, stay here and watch.  Worried about traffic on a Friday and a holiday Friday to boot, we left for the airport with plenty of time.  There wasn't any traffic, leaving us at the airport with several hours to kill.  Hard to say if we just beat the traffic and it would have gotten exponentially worse.  Last trip, Jake was calm as he watched planes and workers from the windows but today was a different story.  The agitation ensued....this now means Jake shouts a bunch of things out and doesn't know what he wants.  First, he was hungry but wherever we took him he said the other place.  Then Jake wanted to go by the window but in the United terminal most of the windows had a panel on the lower half which prevented Jake from watching from his stroller.   We walked around and around with Jake yelling at the top of his lungs to try different places.   After about 30 minutes of this agitated state, a donut settled him down.  Finally, we were able to find one gate where the panels didn't exist and Jake was happy.  After some time, we headed to the gate to board.  As we stood in line awaiting our boarding, Jake decided he didn't like waiting.  He started yelling for a walk and when we didn't comply because we were boarding, he screamed louder and louder.  It was a rough scene with a crowded gate area and Jake yelling at the top of his lungs.  It got more interesting when he started yelling, "I have to go poop,  POOP POOP!"   After what seemed like an eternity, we were allowed to board and we found our row to settle in.  Then a not so subtle reminder from Jake that we forgot to see the pilot sent us upstream against traffic.  We were allowed to enter the cockpit and Jake met the pilot.  After takeoff, Jake seemed to battle with this confused agitated state once again.  He had to go to the bathroom and after the first trip, he proceeded to yell every time we got back to the seats that he had to go again. Yelling ensued and to keep the peace we took 7 trips in about 10 minutes time back and forth to the bathroom.  It was rough period and harder because this behaviour is so out of character for Jake and his normal personality.   Eventually, Jake passed out for the rest of the flight but without first taking its toll on his sleep-deprived parents.  

After forever and then some, we were on the ground and on our way with home with a huge sense of relief.  Unfortunately, Jake returned to his agitated state first about taking his medicine and then ultimately about where he wanted to sleep.   We spent a good 90 minutes doing laps among the bathroom, our room, his room, and downstairs.  He simply couldn't settle down and kept yelling and crying about what he thought he wanted.  Whenever we presented his requested option, it wasn't what he wanted.    We urged him to calm down on our bed which took quite some time but finally he settled down and wanted to go to his room.  We put him down to sleep but a minute later he reappeared in our room.  Surprising, as he shouldn't be able to walk without pain due to the incision from the bone graft taken from his hip.  So, the final choice was made and Jake slept in our bed where he still remains.   A sleep-deprived emotional trip but we are home and hopefully we can cure Jake of this new agitated confused state he has been in.  Luke and Olivia got up early to see us and anxiously await to see their brother and the cast color he chose.

Post-Op day 1

A rough night for Jake who was agitated from his swelling due to the allergic reaction in addition to surgical wounds. The second dose of adovan seemed to work letting Jake rest at 3am. By 6 am the mystery rash had dissipated, a positive sign. Team after Team stopped by to check on Jake, many confused by his allergic reaction wondering what could have caused this unexpected event. Despite the other Dr.'s thinking the allergy team would have answers, the allergists couldn't offer an explanation. Only a referral to an allergist to test Jake when we return home so we don't experience this again during a procedure. With the rash subsiding, most of the teams agreed that Jake would be able to move down to a regular room and felt that as long as nothing unusual happened, we would still be able to make our Friday night flight out of Boston. The surgical team was pleased with the end result of Jake's thumb but did encounter some surprises with his bone graft and quality of bone to draw from. Most of the day was spent with both of us in bed with Jake playing videos on our phones. His new favorite a class performance of cousin Leo's class singing Alphabet Stew. Before Aunt Stacey left for home, we had to have her message us the video to continue its top status on Jake's video playlist. The anesthesiologist came by again to discuss the allergic reaction and urged of the importance to have Jake checked out due to it causing anaphylactic shock. The suspected culprit is the gel foam that was used to stop blood flow and fill the space where the bone graft was taken from Jake's hip. Apparently, the Drs. found a letter to the editor in a medical journal which cited a case where this happened. Good news came in the afternoon and we were on our way out of ICU to a regular room. After settling, Jake wanted a walk so a walk is what he got. We disconnected him from the machines and toured what felt like every inch of the hospital with Jake in his stroller. After a while we had to return as Dr. Upton was paying us a visit. We discussed the reaction again and he did let us know that it was serious but if a reaction like that would happen, better to be in a hospital where it can be controlled immediately. Needless to say we are being sent home with Epi-pens as a precaution. Dr. Upton spent some time discussing Jake and future surgical protocol to keep in mind for in the future. He seems willing and ready to hand Jake's care over to his former fellow and assured us that Jake will be in good hands. He did comment again on Jake overall and really feels good about his future given his mild status. After the visit and sad farewell, we realize this could be our last time seeing him. He told us to keep in touch and it was a tough moment. This surgeon has done so much for us, given our son fingers... allowed him to have the best aesthetic and function possible. Eternally grateful and certainly worth the big out of pocket expense. Then it was time to honor and give back. I went to the blood bank at the hospital to donate blood in honor of Sam's cousin Ariel who was in a horrible accident and relied on the kindness of strangers whose 70 units of blood donated helped keep him alive. I left a note on the wall and those reading this blog I urge you to follow the message. The note read, "a tribute to Ariel Fishman...an unfortunate accident, Ariel needed kindness of strangers. He received 70 units of blood. 70 people saved his life. Let's save peoples' lives...Give blood, help those in need." It is so easy if you can, please take the 30 min to do so. Upon my return we took Jake downstairs with us to eat a quick dinner before returning to the room. Understandably, Jake did not want to return to the room, so four last times later we resisted and settled in. Jake was really agitated and threw an out of character fit. He hasn't slept much and is unsettled so it took some patience but we got him to calm down. It's quiet in 714B now so lets hope it stays that way and we discharge and can return home closing the book on the Boston surgeries for now.